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MSA Trust

National Congenital Anomaly and Rare Disease Registration Service (NCARDRS)

The MSA Trust shares data with the National Disease Registration Service (NDRS), which is part of NHS England and collects information to identify how many people in England have cancer, a rare disease or congenital anomaly.

We have been working with the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) – a sub-section of NDRS – since 2019. NCARDRS records people with congenital anomalies and rare diseases across England. For rare diseases, NCARDRS collects a small amount of information about each person and their diagnosis. This can then be linked to other datasets, like those that capture prescribing and hospital activity.

To make sure that the national registration data is as complete as possible for each rare disease, NCARDRS collects data from many data sources. Patient registers, like that provided by the MSA Trust, can play an important role in giving people the chance to make sure that NCARDRS is identifying them.

That is why when people sign up to become an MSA Trust member, they can also choose to have their data shared with NCARDRS (people living in England only).

By sharing our data with NCARDRS we aim to better understand MSA. The data can help clinicians, researchers and charities to provide better support for those living with the condition.

The national NCARDRS register is also used for research and planning by helping to:

  • look at numbers and trends of people diagnosed with congenital anomalies and rare diseases
  • improve health, care and services for people with these conditions
  • support patients by providing information about their condition
  • give the NHS information to help it further improve the services it provides.

There are strict controls on who can see the information held by NCARDRS to protect your confidentiality. NCARDRS will never publish anything that would identify you. You can find out more about how NCARDRS keeps your data safe in their Patient information leaflets – NDRS.

If you would like to find out more about NCARDRS visit their website here – https://digital.nhs.uk/ndrs/about/ncardrs.

If you live in England and would like your information to be passed on to NCARDRS, please contact us and we will be happy to support you.